My life is shitty.
No, no, no. I can’t say that, they’ll think I’m suicidal.
My life is in the toilet.
Ditto.
Saturday, May 19th is World IBD Day. World Irritable Bowel Disease Day.
That’s it!
Recently I learned about this, umm, holiday. It is a very personal one for me. Way more personal than I want to admit. But of course it’s not my fault. I blame my sister, Judy.
You see, some time in the late sixties Judy pasted a picture on the front of the medicine cabinet above the toilet in our one bathroom.
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Little did I know at whatever tender age I was that that picture would illustrate my life. Because in 1972, not long after it went up, I found out that I had ulcerative colitis. An inflammatory bowel disease. The bloody flux. I was in and out of the bathroom and the hospital for much of my teens and early 20s. What a blast!
Long story short, it ended up that I didn’t have colitis! But we only found that out when a bunch of men (led by Dr. Herbert Hoover) came at me with knives, removed my large intestine and reorganized my plumbing. That was when they found out that I really had Crohn’s Disease.
Crohn’s Disease, is, well, worse. Partly because I can’t for the life of me spell it. But also because it means I still spend way too much time in the bathroom (although I am very well read). Oh, and it can affect the entire rest of your body. Trust me when I say it’s nasty, and that there is no cure. I would be delighted if that were to change in my lifetime.
That’s why I’m divugling my secret to tell you that Saturday is World Inflammatory Bowl Disease Day.
As far as I can tell there are no festivities planned here in the U.S., although there are some in other countries (the ones that have universal health care, no doubt).
So, I thought up some IBD-related activities myself:
A toilet paper squeezing contest!
What a perv
A wet tee-shirt contest:
Contestants try to stay dry in a stall inhabited by a toilet with an automatic flushing mechanism!
No umbrellas allowed!
Lastly, a relay race around a circle comprised of 50 porta-poties set up on a public green!
(The winner of this last one gets to use a non-self-flushing toilet inside a nearby building when they feel the need, which, of course, they will. Repeatedly.)
I’m quite sure the organizers will contact me to help think up activities for next year’s festivities.
This year, folks are asked to be aware of World IBD Day and to wear purple. I understand the awareness part of it – and I would really like to celebrate World IBD Day.
So let’s
- Do more research to find a cure!
- Stop running to the bathroom!
- Take the “ooh” out of “POOH”!
So yeah, I get the raising awareness part. But purple? Wouldn’t brown be a better color?
* * *
For a less snarky take on Crohn’s and World IBD Day, see LifeFromTheSmallestRoom‘s piece on living with the disease.
FiftyFourandAHalf 
I’m sorry to hear of your IBD, Elyse. Just short of age 16 our beloved daughter got a real severe case of UC and nearly died. Here colon was a sieve. She nearly bled out and required a bunch of blood transfusions. She was in ICU and the hospital for a month. We lived at that hospital. We tried all kinds of things, she even tried the very yucky (that’s an official medical term) worm/parasite milkshake, but it didn’t help. We’d adopted her from Chile’ when she was 2 months old and the theory was that her immune system had been super-charged for living there and when she got to the US her immune systm needed something to chew on and chose her colon. Her immune system must have loved the taste of her colon because it completely ignored the nasty parasites and kept munching on their original target. She is doing much better now at age 22, but…well, you probably pretty much know the rest of what her life is like bathroom-wise.
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Oh, dear, Russ. That’s terrible. I’m glad she is doing much better now, and sorry she got so terribly sick. It is a nasty disease, that’s for sure. But I have never known of anyone who actually drank that, ummm, beverage. Has she had surgery? It helped me immensely and actually gave me more than 20 years when I didn’t have to think all the time about where the next pitt stop would be. Absolute freedom.
Should you or your daughter want to discuss it with me, feel free to email me at fifty.four.and.a.half@gmail.com.
My son, Jacob, who will turn 21 next month, was also adopted from Chile as an infant (3-1/2 months). Fortunately for all of us, Jacob has no similar problems, though. We worked through World Child.
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Sadly, way too many folks have admired my guts. And it’s easy to be funny about poop. I’ve always thought if I had to have a chronic disease at least I can retaliate, a bit by laughing at it! (Well, sometimes.)
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I admire your guts for posting this, and your ability to write some humor here under these circumstances. Impressive.
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It’s really brave of you to reveal this in order to raise awareness. And I think a rousing game of Musical Port-a-potties is just what EVERY party needs!
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It’s true. Musical Port-A-Poties is a great game. However, nobody wins if I don’t.
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Wow…I know some young women with Crohn’s Disease and it has truly impacted their lives. You amaze me, as usual, with your humor and sharing your stories as we all journey through this life together.
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It is nasty sometimes, but thankfully not always. Thanks for your kind words, PW. I hope your friends are doing well. And, seriously, if anyone wants to ask me questions, please never hesitate to share my blog and email.
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I love that you have a sense of humour about this. My nephew has been dealing with this most of his life and he is one of the funniest characters I know. Having a laugh at your own expense isn’t always easy but it sure makes things easier to deal with. Thanks for coming out of the “water closet”. 😉
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The only folks who have no sense of humor about this are the gastroenterologists (except my current one, who is wonderful). I was actually reprimanded by my doctor when I was in my 20s for not taking it seriously enough. I responded, “Dr. C, I am doing everything you told me to do. This is the way I deal with it. You’re going to have to deal with that.”
Good luck to your funny nephew — may he have few flare ups! I am actually surprised to hear of all the men who have it as well. I have only known one — all the rest were women.
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Sh*t – I missed it!
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Oh, it’s ok. You can celebrate any day you use the bathroom!
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I agree and hope a cure or at least a better management of Crohn’s Disease is developed. My little pub biz gives our money to colo-rectal cancer research, hence the blog!
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More power to you, Les. You’re doing it for a good cause. And sharing quite a bit of humor to boot. Well done.
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Since you’ve been kind enough to share your story on World IBD Day, I’ll confess that I understand your pain and inconvenience in a rather intimate way, but not for the obvious reasons.
My own experience is the polar opposite, in that no one tells you before they take out your diseased gall bladder that you will never know a day without the joys of chronic constipation for the remainder of your natural life. That was one little secret they failed to share with me, and even though the gall bladder would have had to come out either way, it might have been nice to know in advance that I needed to cram my head full of constipation remedies, or suffer the painful effects of intestinal cement forever. This has been one part of aging that has kept me log-jammed in the mindset that we never even know, when we are young and healthy and free, that the day will come that we will look back at all those pooping-with-ease days as the good ole days.
These days it’s about flax seed and prunes and stool softeners (which always has me picturing a small wooden stool melting softly into the floor, as if its little wooden legs have turned to jello). Speaking of jello, sorry, no gelatin products allowed. Or nuts. Or cheese. Or …. oh hell, the list goes on and on of things I can no longer eat. I can’t believe I have a condition that requires that I give up jelly beans. I mean, really. A life without jelly beans is just so freaking boring. But I digress.
You can trust that I will be decked out in purple as a show of solidarity. But that’s just the color of my face as I’m straining to go. Really. 🙂
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So I guess yours is an irritable bowl for a whole different reason. Oh dear. If only we could swap halves-ees. (Perhaps we will be able to if I learn how to spell it!) We’d meet in the middle and then we would both be normal.
My mother and a cousin share(d) your problem. And while there are occasions when I think the grass is greener on your side, I think that both sides of the problem stink!
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If there is one thing I’m fairly sure I will never be, it would be normal. Even with your half and my half and split down the middle; nope. Still not normal.
🙂
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And of course, being connected to poop (hee hee hee!), people are less inclined to believe it’s serious.
On the plus side, there’s a Beatles song about it! (“Suddenly someone appears at the turnstile; the girl with colitis goes by…”)
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Oh, I know about her. I heard she was going really fast after hearing Creedence Clearwater Revival’s song, “There’s a bathroom on the right.”
Bathroom humor never gets old. There is always a new place to go with it.
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I worked with a woman who suffers from Crohn’s. It was difficult for her- never knowing when she’d be hit with another serious bout. It sometimes led to dehydration. She spent lots of time in the hospital. It’s a wicked disease and I hope they soon find a cure.
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Surgery quite honestly helped me immensely. But it is a nasty thing, Crohn’s. I hope your co-worker finds a solution. More importantly, I hope they find a cure.
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LOL!!! Omg this was too funny. What’s NOT funny is that you had to go through all of that — I’m sorry to hear >_< But you have such a great way of making light of the situation 🙂
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Laughin’ and cryin’ you know it’s the same relief.
Thanks, Joni!:
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What a coinkydink; I’m planning on wearing purple today 🙂 Thank you for taking a light approach to a serious subject; I’ve got a few family members with this. No cure, but every one of them has sworn off wheat and, for whatever reason, that seems to help them.
I wish you a pain-free day, Elyse!!
MJ
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Thanks, MJ. I haven’t tried the no wheat route, but if things get worse I might have to try it. Now things are ok, fortunately.
And I find a light approach works better for me. I have a low tolerance for my own misery!
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When so many people know someone diagnosed with Crohn’s there is something wrong. Your description of the new cure though, parasites? I don’t know, I think I couldn’t do this even if it worked.
I can only say to you, may your flare-ups be few, far between and of little consequence.
Your ability to share information of such a private nature is astounding. Thank you!
Val
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There is research going on, but like many diseases it is for treatment, not cure. But IBD doesn’t have much panache, even though the incidence is increasing.
But I agree about that treatment. I have never been so sick that I would voluntarily drink worm larvae. Nope. Hemlock would come WAY before that!
And as to sharing private information, well, when you have bowel problems, you quickly forget what is and isn’t polite conversation!
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I once had a friend who had an issue with her weight (mind you she was thin already). She drank a tapeworm (she wasn’t intellectually gifted). She had extensive issues for years thereafter, she shared way to much but I did not tend to feel any sympathy for her. She did stay thin though.
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Now that is an incredibly stupid thing to do. And I say that as someone who has a disease that makes everybody thin but me (which is annoying, of course, they are far sicker).
The treatment (which made my doctor chuckle to hear me talk of) is not like that. Apparently this is a normally occurring parasite that we have wiped (ahem) out of our bodies. It secretes some substance that helps the gut repair itself. Sort of the way leeches help coagulate the blood. It’s fascinating biologically. But, as I said, I would have to be really, really, really sick to say, hmmmm, we’re out of wine — I know, let me drink some parasites!
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Excellent combination of being able to use yourself in a humorous way while promoting awareness! Hopefully I will wear purple this evening. 🙂
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It is harder for a guy, isn’t it!
Thanks for your kind words, as always, Frank. Now I’m going to read about my absolute fav, Wylie Coyote, over at your house!
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I think saying that your life is shitty is a fair statement. From now on, I’ll send you good karma every time I flush.
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As long as that good karma doesn’t come in spray form, I’ll appreciate it.
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No, no, it’s completely spiritual and non-toxic.
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Phew! That must be distinguished from P.U.! Thanks, Lisa.
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I’m with Barb, where is the card for this? I will have to work on one soon…my daughter and I will both be wearing purple in your honor. (our favorite color!) Elyse, I love that you can take something so painful and make it humorous, you rock, woman!
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Actually my ability to laugh at it comes and goes (ahem). When I first saw Les’ blog: (http://bestbathroombooks.wordpress.com/) I thought I would be making hilarious poop comments all the time. But I don’t as it is less funny these days. The disease interferes with my life in unfortunate ways, and I am way past ready to be done with it.
BUT, poop is poop and it is inherently funny.
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Thanks for the info. I’ll be at Hallmark tomorrow, looking for a card for this.
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There is a huge section of cards. Everybody wants to talk about poop, haven’t you noticed?
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OH, Angie…
I once had a vet diagnose my dog with colitis (before I knew it was, well, worse – Crohn’s). I said, “I’m sorry, but no. I cannot possibly have a dog with colitis. That disease is MINE. Of course, after that I had to move to a new town.
I can promise you that I rarely wipe my hiney across the carpet or eat my poop. I am, however, occasionally prone to poopy graffitti. I think, however, that’s understandable under the circumstances. And I’m sure your dog will help with the cleanup effort.
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I have a friend with Crohns disease. I don’t have any idea how awful it would be. But I do have two young children, two cats (one actually diagnosed with irritable bowel syndrome…we have to give her a weekly steroid pill or she’ll wipe her hiney across the carpet…I know you don’t do this) and a dog who eats her poop (I know you don’t do this either). I therefore have no problem with poop. I talk about it all day long in fact. I will talk about it even longer just for you. Poop.
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My obstetrician thought I had Crohn’s Disease when I was pregnant with my youngest child and referred me to a gastroenterologist…who couldn’t see me for like, 3 months…at which point my baby would probably died of malnourishment or dehydration…thank goodness it was something else.
My sympathies for your condition and kudos for your sense of humor!
Looking for something purple to wear…which would have the dual purpose of supporting GLBT rights…
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Oooh — that wouldn’t be a nice coincidence. And yes, good GI doctors often have a backlog. The problem I have had with them is that most of them have no sense of humor! How can you look up people’s rectums all day and not have a sense of humor? Thankfully, that seems to be changing.
Crohn’s is nasty, but Crohn’s + pregnancy complications, ooh, not a pleasant thought. Glad they were wrong!
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I’ve worked with a couple of people that have Crohns, so I have an idea of how much No Fun it is. I’ve never liked the name Crohns either, because, there are too many Evil Old Crones in children’s stories, so I can’t get past that. I’ve been on HIV meds for about 15 years now, and while it’s not Crohns, they’re quite evil on my innards, and I spend a good deal of time in the bathroom. I wish someone would make a more comfortable toilet… a cross between a nice reading chair and a commode.
Thank you for being brave enough to talk about poop! 🙂
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I hadn’t thought about the evil old crones. Good point. It is a mean and evil disease. But then you have one too. There really aren’t any good diseases, just as there isn’t really a good way to die. They all suck.
I’ve been talking about poop most of my life, so it is second nature to me. I have to remember sometimes that, well, even though everybody poops, not everybody talks poop!
Stay Well! (Ish?)
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There’s a day for everything. I never would’ve thought there was one for this. I think, maybe, however appropriate brown is, it may be offensive, you think? I’m sure there had to be a vote on the color.
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I’m not really in favor of these “days” actually. I don’t know what you are supposed to do, what they mean. And they seem so shallow — as if wearing purple or brown will make a difference. But awareness, well, that does help, and that I do understand. So I’ll wear purple (probably with brown pants though, just because!).
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I love your sense of humor with this. What wonderful insight and suggestions.
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I cheated when I got a disease that is poop-related. And poop is inherently funny. But brown, not purple!
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I guess you got a head start with that one.
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Yes, it is very difficult to get in ahead of me on a poop joke. Or in a line for a bathroom.
I’ve missed you Lorre!
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Thanks. Same here. It’s been difficult to get around lately. The baby naps less and I’ve been trying to exercise more. Who am I kidding. It’s not more. It’s just exercise for once. You are always at the top of my list when I get around to reading though.
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Ah, you’re a pal!
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I’ll never look at purple the same way again.
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Yes, I don’t think purple is the best color to choose for this particular celebration of life. Besides they use purple for 32 different causes, at least according to Wikipedia, the bible. So by wearing purple tomorrow you can “celebrate” — ADD and ADHD; Adoption; Alzheimer’s disease; Anti-Gay Bullying; Arnold-Chiari Malformation (say what?); Victims of 9/11; Child Abuse (they don’t say whether they favor or oppose this one); Crohn’s Disease; Animal abuse (these must be special animals, non-conformist animals who refuse to be alphabetized) …
You get the picture. So wear purple for whatever reason you choose — because it is a lovely color!
Now brown, that’s a different story…
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Obviously they’re running out of colors and we should just transition into symbols. I vote for a seething, writhing pile of worm Larva! YAY!
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Or a leaky Faucet…. I see Contest Potential here!!!
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I think they use the leaky faucet for bladder problems … have you seen the commercials for those drugs? Oy!
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Oh, right. The copper pipes. Hmmm. guess an exploding anal sphincter it is, then. Unless you want to hold a contest…
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The contest idea is growing on me. It might be fun. I might need technical assistance …
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Your People would submit entries, maybe by submitting an URL, or email, and you could post one of those polls from the dashboard in wordpress. I had people put their Snowman Contest Submissions on their own blogs and I just copied and pasted.
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The Snowman contest was hilarious. Hmmm, I could be like Judy Garland and Mickey Rooney (I had typed Andy by mistake :)). Hey, everyone, let’s put on a show!!!!
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Ooh, yeah! And car magnets, too! I will put one right on top of my Mitt Romney for President bumper-sticker.
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I’m wearing purple right now. And love to you and John and Jacob and, especially “Coops.”
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Thanks, pal. Coops has had a better day so I am cautiously optimistic. Can you hear me knocking on this table?????
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I’m wearing purple from now on!
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I hope it looks good on you, Susan! But really, just tomorrow and whenever you use the bathroom will do.
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Purple it is! My mom has Ulcerative Colitis and just recovered from a 6 months stretch from hell. One good thing that has come from it…she knows where every nice bathroom is in the tristate area…that is a perk.
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Hope your Mom is doing better, Tops. And if she ever wants to talk about the surgery option, let me know. I am always willing to talk about it. It changed my life for the better. Truly. I will be thankful that I had it for the rest of my life.
When I was at my sickest, 30 years ago, a poster came out of the “Doors of Georgetown.” My roommate suggested I do one entitled “The Bathrooms of DC.” I could have made a mint!
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Thank you! You could have made MILLIONS..we tell my mom the same thing. Hahaha
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Also never heard of IBD day.
Any promising Crohns research going on anywhere?
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IBD happens in an area that no one (including me) wants to talk about. That’s life.
There is a lot of research going on. I’m taking an old drug that helps with the frequency issue (TMI, sorry) that they didn’t realize until recently can be helpful (there is no medical literature on it, I looked).
There is one new treatment that cracks me up. There is a theory that the huge increase in IBD in the developed world is because we are too clean. What is the treatment? You drink intestinal parasites — worm larvae. It makes those periodic barium swallows seem positively delish!
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okay, I’ve been nodding my head in empathy and wearing a concerned and yet slightly amused expression as you’ve tackled the subject with your usual panache, but
intestinal parasites? worm larvae?
*gags*
*gags again*
*gags out loud*
now we’ve REALLY entered into TMI territory! I could have gone all day without that little tidbit of knowledge. No wonder they say growing old ain’t for sissies. You have to have the stomach for it. (*sorry for the dumb pun*)
🙂
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Puns are always graciously accepted.
And yeah, the drink would be rather hard to swallow. But it keeps me on the bright side when I can say to something boring I’m eating, “well, at least it isn’t worm larvae” — it comforts me. 🙂
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*gag*
I’ll try to keep that cheery thought in mind the next time I’m forced to chew my way through another handful of prunes. At least it’s not worm larvae. I’m certain that will help.
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GREAT WORK ON THOSE BOLDS andItalics!
I do remember reading about this treatment – plus one involving other bacteria. I have an unspecified IBD (the doctors snipped and peeked but no diagnosis) and at times took different herbal supplements, including probiotics – 10 – 15 billion units a day is best. Also, going gluten and dairy free helped, and later, a juice fast allowed me to have cheese again, without getting IBS and ear infections 😉
Sorry it came back. My nephew got it at 15 and now at 30ish has some real problems from Chrohns. Maybe if we ate more like Gorillas, picking our food up off the ground all day, we’d be ok. I wonder if growing your own food and letting a little dirt cling to the carrots and lettuces would help? Afterall, our ancestors toiled for a couple million years without soap, pesticides or dishwashers.There must’ve been a natural immunity which has since weakened into extinction in our gut flora.
Think I’ll go eat a Turd Sandwich now….
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– I meant to say, Sorry your Chrohns came back, not my cheese infections 😦
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Thanks to you, Spectra, I too am an impressive commenter!
Sorry to hear about your prob and your nephew’s. It stinks. Literally and figuratively.
I don’t know what we can do about eating. We lived near an organic farm in Switzerland, and my dog got e-coli from grazing there, so I am not sure that would be all that helpful! (I do not pay extra for organic, as a result.) But maybe if I could make sure I only at really clean poop, well then, it might work!
Sadly, the things that don’t upset my system are all the “wrong” foods. And, strangely, “DOTS” — you know that gross candy that sticks to your teeth. If I’m having something I’m not sure about, I eat a handful of DOTS and it helps. Bizarre!
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I wonder if there is xanthan gum in dots? or Guar gum? Usually there is in chewy candy, and its what is used in gluten free breads/crackers etc for stickiness and stretch…but the guar gum is said to Make some people sick – having the opposite effect on you would be interesting.
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I don’t know what’s in them. I haven’t looked at the ingredients. When I’m eating crap, I try not to!
The bible, Wikipedia, says:
“According to PETA DOTS are vegan,[3] and according to the Tootsie Roll Industries website, they are gluten-free, nut-free, peanut-free, and kosher[4] (officially certified kosher by the Orthodox Union as of December 1, 2009).
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Hi,
I have never heard of World IBD Day, who even knew it existed, the things we learn.
I’m sorry to hear about your condition, but how stupid of the doctors to miss it all together, unbelievable.
I love the photos you used just hilarious. 🙂
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I HAVE IBD and didn’t know about World IBD Day until recently. So I wouldn’t feel too bad if I were you!
In fairness to my doctors, who were wonderful, Crohn’s in the large intestine is very difficult to distinguish from Colitis until a pathologist slices and dices–after surgery. Even after that, they weren’t sure and told me (30 years ago when I had the surgery) that if it came back in 10 years it was Crohn’s — if it didn’t it was Colitis. I was really delighted when I passed the 10 year mark, but it came back at year 22 :(. But I had 22 years where I didn’t have to worry about it, and I am quite thankful. Even now, it isn’t bad very often. Just a pain in the ass, literally and figuratively!
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I will definitely wear purple to take the ooh out of pooh.
Speaking of problem plumbing, for some reason your post did not show up in my reader. Do I need to refollow?
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Glad you will be in purple (and brown too, maybe?). I will admit that I put the “Ooh” in “Pooh” line in thinking of you. And there are not very many people I would say that to and not run.
I don’t know about the Word Press Reader — I checked mine and didn’t find myself. (Channeling teen angst here). And since I DO follow myself, I was sad to not find myself.
You might want to unfollow (sniff) and re-follow. Otherwise, maybe Word Press is ticked off at me for the piece I wrote last week. You never know!
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I admire you for being able to be funny about your condition– a student recently wrote a report on Crohn’s and I had no idea! I get migraines and they just took purple, too, so I’ll wear purple for all of us! (Hate those auto toilets!)
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I once told my sister Judy that at least I got a disease that had humor potential!
I’ve had Crohn’s for nearly 40 years and I still learn about it. Fortunately, I don’t always learn about it the hard way.
And those toilets are awful — they are designed to be more sanitary, but if they spray you with urine and feces, um, they aren’t!
Thanks for commenting, Middle!
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